Monday, February 27, 2012

2012 Special Olympics of NJ Polar Bear Plunge

Sometimes we really don't have the words to truly express how we feel in any given moment.  I have sat here trying to eloquently say the words "thank you", but I honestly don't know how to do that.  On Saturday, we participated in our 3rd Special Olympics of NJ Polar Bear Plunge and it was BY FAR, our biggest and best year yet.  Team CAT Crew (created in honor of our beautiful little boy, Colin Allan Tobin) had 81 official members and prior to the plunge, had raised just over $45,000.  I know that some of our members brought additional donations with them to the plunge, so our amount should continue to raise over the next month or so.  

This was the first year that we could honestly say that it was cold.  Although the air temperature was about 40 degrees, it was incredibly windy and made for some uncomfortable conditions.  Colin and Kailey spent the morning with us, but due to the conditions, we ended up sending them home with my mom.  Kailey was so miserable and although I think Colin would have made it, the crowd was very challenging to deal with, especially considering we would have been bringing a wagon onto the beach.  It. was. cold.  However, when you are doing it for a specific reason, anything is tolerable.  

Because of so many brave individuals plunging into the Atlantic on a very windy February day, as a united group, we helped the Special Olympics of NJ to raise the most amount of money yet with around $1.4 million dollars.  Million!  

Below are many pictures from the day thanks to our Team Captain Jorie Gallagher (and great friend of mine)...

Click here to view these pictures larger

Thursday, February 23, 2012

Almost a Year

Our pretty little girl is just shy of a year now and sometimes I can't believe how fast time has flown.  I feel like just yesterday I was patiently waiting for her to arrive.  She has filled our home with so much cuteness,  laughter, giggles...and sass and I love it!  She has her own distinct personality and she is VERY independent.    Sometimes it makes me a little sad that she is not a snuggler like Colin, but lately in the right moment, she will let her body just give in to yours.  Those moments are the best.  

It has been so interesting to watch a child whose development is so different than Colin's.  Things do seem to come easier to her, but they are also very different kids when it comes to how they do things.  We are so surprised when we see her do things that we haven't spent a lot of time on, like putting rings on the stand...

She is very proud of herself when she is up and about, but is not quite ready to "let go" and be on her own.  I'm not sure I am ready for that just yet!

Although both of my children are very different, the worry is the still the same.  Down syndrome or not, I have my own worries when it comes to Kailey and she has scared me in ways that Colin has not because she is not afraid to try so many things.

More to come in just under a month! :)

Monday, February 20, 2012

Waving the White Flag

I know that this is a post that I can just re-post over and over again because you have heard this so many times from me before, but we are at our wits end again with Colin and his feeding issues.  We are really frustrated because things have seemed to have taken a turn for the worst and we honestly don't know what to do anymore.  Colin is currently eating eggs (if we can force them enough), yogurt, pudding, cottage cheese, and ice cream.  That's it.  What is really upsetting to me is that before Colin had his bout with strep the week before Christmas, Colin was doing so well feeding himself everything and was even trying lots of new things (and even eating pasta for the first time in over a year).  However, things have not been the same since and we are progressing in the wrong direction.  

Today during breakfast, Colin threw his eggs and didn't want any more, at lunch he ate about 6 bites of cottage cheese and then attempted to throw it, and at dinner, he threw his yogurt when he was only half done.  This is a trend that has been continuing every day.  At school, we hear that Colin does pretty well during lunch, but we are not seeing the same things at home.  

I honestly don't know anymore what the problem is.  I don't know if it is a medical issue from the past (reflux? constipation? throat pain?) all of which he takes or has taken medication for, a behavior issue (gaining independence? control?), something related to Down Syndrome (I don't even know what to list here), or just because.  We have tried everything.  No matter what, it is really frustrating because we honestly don't know what to do anymore.  I can tell you that I dread meal time, but try to keep a positive outlook and attitude because of all the potential reasons that could be associated with it.  It's tiring though...

Today at dinner when Colin threw his yogurt, I wanted to just cry.  He is not losing weight, he is still really active, he seems himself, but just is not eating and it worries me.  

Come on us out here!

Wednesday, February 15, 2012

And Then it was Now

When Colin sat for the first time, I cried because it was the first big milestone that I had waited for.  Then, when he sat up for the first time, I cried because he was becoming mobile.  I can't even begin to tell you the excitement I felt when he did the worm crawl for the first time because now he was really on the move.  I cried when he crawled the right way (I mean, he was doing it the right way and was STRONG enough to do it that way).  I cried when he stood up, I cried when he hesitantly took his first step and I have now cried because he is walking.  He walks MORE than he crawls.  It's becoming our new normal.  In fact, we pull in to the driveway, he says that we are home, I take him out of the car and he walks right up to HIS car in the garage and gets in.

He. is. walking.

I can finally and officially report that and I am so excited.  I smile inside (and out) every time I see him walk.

But do you want to know what I have now been the most emotional over?  Colin called me "mom" the other day.  He is saying mom when I walk in a room.  He has never done that until this week.  It makes me teary to say it because I have waited so long to hear my baby call me mom.

Sunday, February 12, 2012

Pot Luck

Kailey is on the move.  I can't believe that BOTH of my kids are walking or so close to walking at the same time!  Chris and I used to joke around about that when I was pregnant...but didn't think we would be pretty close! It is fun to see Kailey explore and take off!  She hasn't tried anything out yet without holding on, but man, she has no fear when she is holding on to something!

Have I mentioned she's weird?  This is her new thing (see picture below).  She will be playing, and then all of a sudden, will just lay down and take a rest.  No real reason, no sleeping, just laying there...

Love the sibling sentiments that just happen out of nowhere, just totally unprompted.  Makes my heart melt...

Have I mentioned that she's on the move?  

Miss Kathy had Colin doing some pretty neat stuff during therapy this week.  Love seeing new things! 

Colin got his new ipad!  He LOVES it!  The overwhelming part for me is finding apps for him!  He's a little bit "tap happy" right now, so we have to work on that, but he has been doing really well with sound production, mimicking what he hears! Well worth it!!

Wednesday, February 8, 2012

Almost 3!

Our baby is almost 3! This means that we are now just starting the process of Child Study Team meetings with our local school district for Colin's transition to preschool in April.  Can I just say YIKES!?

We had our second meeting today of several to determine if Colin is eligible for the preschool program (obviously he is eligible as we were told several times) .  After a quick introduction, we were fired at with many questions about the things Colin is and is not doing.  I was a little annoyed at first because I felt like we could have been asked questions about who he is first before we went right into the things he can and can't do.  However, thanks to Chris' sense of humor and ability to lighten up any situation, I started to feel a little bit more at ease (after there were a few bouts of laughter at his comments and jokes lightening up the atmosphere).  The one question I have the hardest time with is how many words we think Colin can say and use.  I've never tried keeping a list because Colin can say lots of words and we hear lots of new ones every day.  However, overall, it wasn't too bad and we will need to bring Colin to three different sets of evaluations: Battelle (measuring different areas of development), speech, and then eventually gross and fine motor.

Despite this process feeling a bit overwhelming, I am really excited for Colin to start preschool as I think it will be great for him and meeting his needs.

One thing I was really excited to share with the team is the fact that Colin is walking since things like walkers and wagons were brought up the last time since he WASN'T walking.  He is on the move and it still makes me smile to see him walking all over the place.  It just makes me SO HAPPY.  Every day when we get home, Colin gets out of the car, walks into the garage, and right to his own car.  He loves it!

Kailey is getting into everything herself and is a little trouble maker.  However, what makes me smile is when you find her over by the bookshelves just flipping through the pages of the books.  She is so gentle when she does it.

...And just some fun pictures from dinner today.

Tuesday, February 7, 2012

Love These Things...

Today after school, I looked over and saw Colin playing with his baby (which isn't unusual lately) but what caught my eye was the fact that he went over, got the mustard bottle that goes with his grocery cart (well, stole it from kailey), and started feeding the baby! I love seeing little things like that....they just pleasantly surprise me.

And finally, some more attempts at a nice sibling shot...maybe one day!

Mom, she is touching me!

Kailey: get me out of here!

Colin's hugs are not happily accepted by Kailey.

The fish-eye from Kailey...are we STILL trying to do this?

Monday, February 6, 2012

Small Miracles

When therapy was over on Saturday and Colin's therapist was talking about all of the things that we needed to work on to get him ready for preschool in April (after one of the worst therapy sessions we have had since the beginning!) I just started crying.  I haven't felt that emotional in a long time and was just frustrated and overwhelmed.  We are in a "rough patch" so to speak lately as Colin hasn't been eating well and we have been having some behavior issues.  I am pretty sure that Colin doesn't feel well (we all are still fighting some sort of cold and congestion) so that probably contributes and in many aspects he is a very typical 2 year old exerting some independence.  We have been fighting some of the same feeding challenges and the other day it all just seemed overwhelming.  

However, as with any bad day, there is always a good one on the other side and tonight was that night.  I had an enjoyable night with my two favorites and although I had to bargain with him, I got him to eat a few pieces of a pancake and then of course his ice cream.  

We all know on this journey (or ANY journey for that matter) that some days are just better than others...

Thursday, February 2, 2012

Shake that Booty!

Today is Chris' birthday and unfortunately, he had to work all day long including a basketball game until late.  To help him celebrate, we went to his game to cheer him on.  Colin sure gave Chris a great birthday present...a little song and a dance prior to the game.

Let's just say, this kid's got mooooooves.  

Happy Birthday Daddy! We love you so much!